Caregiving comes to the forefront of issues around aging

By Judith Graham and Eileen Beal

The challenges of caregiving are getting new attention from AARP and the federal government as baby boomers struggle to assist their aging, ailing parents.

AARP and the Ad Council turned a spotlight on the issue in an advertising campaign that began last August, featuring caregivers screaming silently in frustration over responsibilities such as taking a parent to the doctor or dealing with medical bills.

At the same time, AARP premiered an expanded resource center on caregiving on its website with experts who respond to readers’ questions and tips on everything from legal and financial matters to end-of-life concerns.

What is caregiving? It can encompass everything from helping an older adult bathe or get dressed to coordinating medical care delivered in the home, going with seniors to medical appointments, handling insurance claims, and much, much more.

Why is caregiving important? Without the help that family and friends provide, many older people would find themselves unable to live on their own, manage their medical conditions, or handle their affairs.

If caregivers walked away from these responsibilities, who would step in to care for older adults and at what cost? The reality is that the government doesn’t especially want to pay for the many services caregivers supply. Free labor is a better and much cheaper alternative, from a budgetary standpoint.

The alternative is to give caregivers more support so they don’t burn out and become ill, demoralized and depressed – risks well documented in the medical literature.

In that vein, the Centers for Medicare & Medicaid Services upgraded its AskMedicare web site to include a special section for caregivers with links to resources and health and wellness information, as well as instructional videos and an electronic newsletter.

The Veterans Administration launched a caregiver support line (855-260-3274) that provides counseling, information, advance, and links to community resources. A few months later, the federal agency unveiled a new caregiver program for post-9/11 veterans who sustained serious injuries in the line of duty. (Older parents who aid these vets can get monthly stipends for doing so under the program.)

The VA also has a caregiver resource page with a comprehensive list of support services for veterans’ caregivers and tips on getting organized, preventing medication mishaps, and communicating with providers, among other subjects.

Meanwhile, caregiver support would get $10.5 million in funding under the Department of Health and Human Services’ National Alzheimer’s Plan – an amount that some critics say doesn’t adequately recognize how important caregivers are, what they do or how much help they need.

THE SCOPE OF CAREGIVING

Several major reports have examined the scope of caregiving in the United States recently:

Valuing the Invaluable: 2011 Update The Growing Contributions and Cost of Family Caregiving (AARP)

In 2009, about 42 million Americans provided caregiving support to an adult with limited ability to perform daily activities.  (This is a point-in-time estimate.  Extended over the course of a full year, an estimated 61.6 million Americans served at some point as caregivers.)  The value of their unreimbursed caregiving efforts in 2009 is estimated at $450 million.

People who supply these services often don’t think of themselves as caregivers, this report notes:

“Many individuals who provide assistance and support to a loved one with chronic illness or disability do not identify themselves as ‘caregivers’ but rather describe what they do in terms of their relationship with the other person: as a husband, wife, partner, daughter, daughter-in-law, son, grandson, niece, or close friend.”

It’s common for caregivers to contribute financially to an aging parent, sibling or friend, and 27 percent report moderate or significant financial hardship as a result.

With the recession and local and state budget cuts, the burden of caregiving is falling even more heavily on many families and getting affordable help in the home (from state-funded aides, for instance) or respite care is even more difficult than it has been in the past.

Seniors and Caregivers – Online Survey (2012, American Academy of Family Physicians)

This Harris Survey, conducted in March 2012, looked at a relatively small population of caregivers – only 241 people. Still, its results are interesting:

• 72 percent of caregivers believe that caregiving is affecting their health.  But most don’t think the impact is especially significant.
• 88 percent of caregivers reported feeling stressed by their responsibilities
• Just over half of caregivers (52 percent) said caregiving duties caused them to neglect their own health, errands, home, family or friends
• Most caregivers (63 percent) turn to doctors or other health care providers when they have questions about the people they’re caring for. Nearly two-thirds say they find it hard to come up with “credible information” on various health issues.

The MetLife Study of Caregiving – Costs to Working Caregivers (MetLife Mature Market Institute, 2011)

An estimated 9.7 million adults over the age of 50 served as caregivers to aging parents in 2008, this study found.  About 24 percent provided basic personal care while 25 percent provided financial assistance. The percentage of adults over 50 giving basic personal care to aging parents tripled between 1994 and 2008.

“Family caregivers are themselves aging and yet are providing care at a time when they also need to plan and save for their own retirement. These factors are especially important as workers emerge from the economic recession in the U.S. and its impact on their future financial security,” the study notes.

Two-thirds of these caregivers are women;  one-third are men.   More than half of all caregivers (57 percent) are in the workforce.  The value of lost wages and Social Security benefits for women who leave the workforce early to care for aging parents – a common occurrence – is about $324,000.  For men, it’s about $284,000.

Other costs – such as less time spent with children, less money put away for retirement, and more health problems, with attending expenses – are more difficult to calculate.

“(Caregivers) may also have less money available to help their children as they prepare for college, marriage, and owning their own homes. Caregivers of aging parents often find themselves “sandwiched” between assisting two generations and face difficult, stress-inducing decisions about how to allocate resources,” the study says.

STORY IDEAS

• How has the economic downturn affected caregivers and their ability to help older relatives?
• How are budget cuts affecting programs that support caregivers in your area?
• What new technologies are being developed to help caregivers oversee older adults living at home?
• What kind of training is available for caregivers?   Focus on new programs.
• Does Health Policy affect caregivers?  How?
• How are workplaces adapting (or not) to the demands of middle age workers who have caregiving responsibilities?  Has progress been made in implementing family-friendly policies?
• What opportunities are there for caregivers to be paid for assisting older relatives?

LEGISLATION

The National Family Caregiver Support Program (established in 2000 under the Older Americans Act) funds state programs that support caregivers of older adults.  Services are offered through Area Agencies on Aging.  To find programs in your state, use the Eldercare Locator (see resources section below).  Or call your local Area Agency on Aging and ask for the family caregiver support program coordinator.

ORGANIZATIONS

• National Alliance for Caregiving
• Family Caregiver Alliance/National Center on Caregiving
• National Family Caregivers Association
• The Well Spouse Association
• Caring Across Generations
• Center for Long Term Care Research and Policy at New York Medical College

RESOURCES

• Eldercare Locator: This government-sponsored site helps older people and their families access caregiver support services and other services that help seniors live safely at home.
• Next Step in Care:  Family Caregivers & Health Care Professionals Working Together: Look at this outfit’s easy-to-use guides for family caregivers.
• National Alzheimer’s Call Center (800-272-3900 )  provides 24/7 advice and consultation to people with Alzheimer’s disease, their caregivers, and their families.
• Information about caregiving from the American Society of Clinical Oncology
• Information about caregiving from the American Cancer Society
• Information about caregiving from the American Psychological Association
• Family Caregiving 101, a website sponsored by the National Family CaregiversAssociation and the National Alliance for Caregiving
• Caregiving.com
• Family Care Navigator:  State-by-State Help for Family Caregivers
• Caregiving resources from the National Assn. of Area Agencies on Aging

REPORTS

• Family Caregivers – What They Spend, What They Sacrifice (Nov. 2007)
• Caregiving in the United States (2009)
• Assessing Family Caregiver Needs:  Policy and Practice Considerations (2012)
• Stress in America (American Psychological Assn., see section on caregivers)

BLOGS

• The Alzheimer’s Reading Room
• Caring for Our Parents
• The Caregiver’s Voice

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Eileen Beal, M.A., has been covering health care and aging since the late 1990s. She’s written several health-related books. including Age Well! with geriatrician Robert Palmer, and her work has appeared in Aging Today, Arthritis Today, BottomLine Health, Current Health, WebMD and various other publications.

Veteran health care journalist Judith Graham served as AHCJ’s first topic leader on aging. She has written about health care finance and policy since the mid-1980s, including 14 years at the Chicago Tribune.